Extend Medical Assistance in Dying to Incapacitated Persons? 91% of Caregivers Asked Say Yes

MONTREAL, Sept. 21, 2017 /CNW/ - At a press briefing on this World Alzheimer's Day, the Federation of Quebec Alzheimer Societies (FQAS) invited Professor Gina Bravo, of the Faculty of Medicine and Life Sciences of the Université de Sherbrooke and researcher at the Research Centre on Aging of the CIUSSS de l'Estrie – CHUS to make public, for the first time, the results of the first segment of a scientific study of attitudes toward medical assistance in dying and caregivers in Quebec. The study specifically examined the extension of medical assistance in dying to incapacitated persons and what are the thoughts of caregivers in Quebec on the issue. Mtre Jean-Pierre Ménard, Ad. E., with Martin & Ménard Avocats, Tonya Thibodeau, Executive Director, Suroit Alzheimer Society, and Sabrina Lacoste, a young former caregiver, were also present to present their own points of view on the subject.  

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In Quebec, more than 141,000 people have Alzheimer's or another neurodegenerative disease. When caregivers are included, nearly 500,000 Quebecers are engaged with this day-to-day fight. This past March, the Minister of Health and Social Services, Dr. Gaétan Barrette, called for a re-examination of medical assistance in dying. What is the opinion of caregivers on this issue?

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"Since the issue was reopened by Dr. Barrette, medical assistance in dying has increasingly become a concern of those with the disease and the caregivers we support every day. That is easily understood, given that to date, there is no cure for the disease," pointed out Jean-François Lamarche, Executive Director and CEO of FQAS. "We invited Professor Bravo of the Université de Sherbrooke to announce the results of the first segment of her study of medical assistance in dying and caregivers. Professor Bravo had asked the Alzheimer Societies to put her in contact with caregivers in order to conduct her study. The FQSA has not adopted a position on this issue but wishes all serious data available to be on the table in order to better lead an informed broad public debate."

The study entitled "Extending medical assistance in dying to incapacitated persons: what do caregivers in Quebec think?" involved 306 caregivers, 220 women and 86 men. Twelve Alzheimer Societies across Quebec participated in collecting the data by sending the questionnaire to caregivers they support.

"Our study is the first in Canada to survey caregivers to find out what they think of the idea of extending medical assistance in dying to incapable persons, and for those who are favourable to the idea, under what conditions," explained Professor Bravo.

Some interesting data:

• 12 Alzheimer Societies participated in collecting the data by mailing the survey materials;
• Replies came essentially from women (72%) 31 to 90 years old, with an average age of 66;
• If they were to develop Alzheimer's disease, 77.5% of the respondents would prepare an advance directive for assistance in dying;
• When asked what conditions ought to be met, 65% chose the presence of physical pain that could not be relieved and 62% the presence of mental suffering;
• 65% of the caregivers would speak with the physician treating the person with Alzheimer's disease who had prepared an advance directive for assistance in dying before becoming incapacitated.

In conclusion, 91% of respondents supported the idea of extending medical assistance in dying to incapacitated persons at the terminal stage, showing signs of distress and in the presence of a written directive, although 72% of respondents said they were favourable to it even in the absence of a written directive. And this was the case, whatever the age, sex, country of origin, ethnic group, level of education or socio-economic status of the caregiver. The only factor that exercised any influence was the importance of religion. However, extending medical assistance in dying to incapacitated persons remains a complex subject in ethical and clinical terms, because of a person's potential for adaptation to their condition state and the impossibility of confirming their desire to die after a certain stage of the disease has been reached.

"The issue of medical assistance in dying forces us also to look more closely at what can be improved in what is currently available. It is necessary to examine how to make sure that persons with the disease can remain at home as long as they can. The health professionals who see them on a daily basis should be trained to know how to interact with them. It is also necessary to review the length and quality of palliative care when people have reached the terminal stage," added Mr. Lamarche.

The next segments to come of this study will also include data collected from physicians, nurses, people over 65 and people in the first stages of Alzheimer's disease.

To obtain more information and to consult the data from the first segment of this study by Prof. Bravo, visit www.alzheimerquebec.ca

About the Federation of Quebec Alzheimer Societies (FQAS)

Acting for more than thirty years as the provincial spokesperson for twenty (20) Alzheimer Societies which are present in all Quebec regions, the Federation of Quebec Alzheimer Societies represents, supports and defends the rights of 141,000 Quebeckers affected by Alzheimer's disease and other neurodegenerative disorders and their caregivers. The Societies offer support, monitoring and coaching to people affected by one of these diseases and to their caretakers, through programs, services and training in order to maintain the best possible quality of life. Furthermore, the Federation raises public awareness to the personal and social consequences experienced by the people affected by Alzheimer's disease and other neurodegenerative disorders and contributes to the research on their causes, treatments and healing.For information: http://www.alzheimer.ca/en/federationquebecoise

Facebook: @LaFederationQuebecoiseDesSocietesAlzheimerTwitter: @FqsaAlzh

 

SOURCE Alzheimer Society of Canada